Patient Stories

Gastroschisis. It’s a word Lourdes had never heard before. But, when she was 12 weeks pregnant with their second child, they learned their baby boy, Omari, would be born with gastroschisis. Because he came at 36 weeks, Omari was delivered at his local hospital. However, that night, he was transferred to Nemours Children’s, where he had surgery to put his tiny intestines back into his abdomen. It was his first surgery of many, and he’s been at Nemours since.

As the days turned into weeks at Nemours, Lourdes searched for coping mechanisms for herself and Omari’s older sister, Malea. She quickly discovered our NICU Art Therapy Group for parents and other caregivers.

“I’d never heard of Child Life before our family started this journey, and now they’re a lifeline for us. The art therapy group sessions are extremely therapeutic for me, and my classmates are also experiencing extended inpatient stays,” says Lourdes. “We’ve become a small support group for each other.”

As the doctors and nurses address setbacks and make progress with Omari, Lourdes appreciates Child Life for making positive memories for her family. To celebrate Independence Day, Child Life used Omari’s footprint and turned it into an American flag. Over the summer, they also enjoyed Camp WeBelong and a pep rally for the Phillies, among other Child Life events. By Halloween, Omari had “graduated” from the NICU and changed rooms five times. But both kids got to dress up in costumes and had photos taken.  A stuffed teddy bear from Child Life is now one of Malea’s favorite toys.

“It’s stressful to be in the hospital for so long, always hoping that Omari gets healthy enough to be released so we can all be at home together,” says Lourdes. “But Child Life makes the experience much less difficult. We feel surrounded by a team that cares about us. They understand what we’re going through and know what we need even before we do.”

Every three months since Madi was 8 months old, she and her family have commuted to Wilmington, DE, from their home in Reno, NV, so she can receive a new cast that begins under her arms and extends to her hips. She is getting her tenth cast this month.

“When we got to Nemours Children’s for the first time, there was an immediate sense of calm — that was brand new for us. Clinicians from every subspecialty that we saw knew exactly what we were facing with Madi and how to achieve the best possible outcomes because they’d previously treated other kids with her form of skeletal dysplasia,” says Anna, Madi’s mom.

“They let us know she would lead a full life and do everything that everyone else can, just a little slower and differently than others.”

Her Nemours Children’s team was able to correctly diagnose Madi with spondyloepimetaphyseal dysplasia type 1. Also known as SEMDJL1, her condition was caused by a mutation of the B3GALT6 gene — one that only 34 other people worldwide are known to have. For Madi, SEMDJL1 means most of her joints are loose, some dislocated. She has a difficult airway, which requires her to use a feeding tube (Madi calls it her magic straw).

There are many other medical obstacles that her family faces regularly. Madi’s team includes surgeons and clinicians from orthopedics, radiology, ENT, nutrition science, pulmonology, gastroenterology, pulmonology, cardiology and ophthalmology to keep her as healthy as possible.

Members of the Child Life team play a central role in Madi’s wellness during regular stays at the hospital, which can last from three to nine days.

“Child Life is amazing! They’ve gotten to know her and go above and beyond to make her hospitalizations feel homey. They make sure she’s playing and being a kid at all possible times,” Anna says. “We see Child Life staff and volunteers multiple times a day. They focus on Madi and still find time to connect us to other parents at the hospital who are experiencing similar journeys so we can support each other.

“It’s hard to imagine where we’d be without Nemours Children’s and their medical and Child Life professionals. Before we knew about this hospital, our newborn Madi was scheduled to have three unnecessary surgeries based on misdiagnoses,” says Anna. “We’ve never had to question anyone here. They’re always anticipating our needs before we do – whether it’s the growing rods she is having implanted this month or a visit with Ali, their facility service dog.”

What’s it like when your child spends years in a hospital? 
Sydney and Odell can tell you all about it because their son Walker was admitted to our pediatric intensive care unit (PICU) at Nemours Children’s Hospital, Delaware two months shy of his first birthday. He spent the next 25 months of his fragile life with us. Along with our world-renowned clinicians, our child life team served as a lifeline for the young family to help them cope during their days and nights and help Walker reach developmental milestones.

PICU Child Life Specialist Molly planned Walker’s first birthday celebration. Child Life Specialist Kim assumed Walker’s care when he “graduated” from the PICU. She arranged a family holiday shoot to celebrate their first Christmas in 2020. When he turned 2, Kim captured the special day with a photography session in the Child Life Clubhouse. And Walker got to meet Santa during his second Christmas.

But normalizing the hospital experience is a 365-day-a-year series of events and interactions — Walker and his parents consistently took advantage of many Child Life offerings. They worked with the Child Life Gaming and Technology Specialist Scott, who procured adaptive equipment like a special iPad stand to accommodate his full body brace, regular music therapy sessions for developmental stimulation, craft time, BINGO games, Tiny Tots activity sessions, art therapy for Sydney, and celebrating Thanksgivings, Mother’s Days, Father’s Days and Independence Days.

Despite countless rigorous studies verifying that child life services consistently improve kids' medical, psychosocial and developmental outcomes, insurance companies do not reimburse anything related to their work. Philanthropy fuels every facet of our Department of Child Life, Creative Arts Therapy & School Programs.

How did Walker and his parents land at Nemours Children’s?

Twenty weeks into her pregnancy, Texan Sydney learned through an anatomy scan that her son’s thigh bones were developing three weeks behind the rest of his body. Walker was born in Fort Worth in November 2020 — during the depths of the pandemic — misdiagnosed with a fatal condition and sent home on hospice.

When a post about Walker went viral on Facebook, moms of kids with skeletal dysplasia from all over the country wrote with the same message: Get to Nemours Children’s in Delaware. When he was just 3 months old, they drove to Nemours Children’s, where he was diagnosed with diastrophic dysplasia, which is one of hundreds of forms of skeletal dysplasia and dwarfism. They were grateful to have a clear understanding of Walker’s medical prognosis. The family went home to Texas with the correct diagnosis and tried to work with their local doctors for his care but found frustration at every turn.

“The doctors we saw in Texas seemed afraid of Walker’s condition and would brush us off,” says Sydney. “We’d ask questions, and they’d say, ‘Well, let’s see where he is in a year.’ Seven months later, heading back to Delaware felt like a no-brainer. We needed the expert care we could not find in Texas.”

Sydney and Odell soon realized they needed to relocate to Delaware to give their son the chance to live his best life.

“The doctors at Nemours Children’s were world-renowned for treating kids like Walker — it was instantly clear that they knew what they were talking about,” says Sydney. “The first order of business was getting his feeding and breathing corrected, so we were admitted immediately. Back then, we had no idea how he was struggling to breathe.”

Today, Walker has graduated yet again — this time to a long-term pediatric skilled nursing facility in Newark, Delaware.

“We’re about to party for Walker’s third birthday, and members of our Nemours Children’s team will be with us to celebrate,” says Sydney. “They have become part of our family — these compassionate clinicians, nurses, social workers and child life specialists who were there for us when our blood relatives were in Texas. It is so gratifying to know we’re providing the best possible care for our son. I don’t know where we’d be without Nemours Children’s.”

After experiencing pre-eclampsia at 22 weeks of pregnancy, Lauren gave birth to her daughters at just over 29 weeks. Ellie and Walker’s first experience at Nemours Children’s was as preemies in our NICU.

Months had passed when Lauren and her husband, Mark, noticed Ellie’s nearly 1-year-old arms and legs were significantly tighter than her twin sister Walker’s limbs. They pointed the issue out to her pediatrician. “It’s too early to diagnose cerebral palsy -,” was his reply. Lauren felt blindsided — she was unfamiliar with cerebral palsy (CP).

At 2, Ellie was diagnosed with CP; her sister was already walking while Ellie wasn’t yet sitting up. Based on her research of CP programs around the country and first-hand experience with our clinicians, Lauren was comfortable continuing care with us.

Following extensive hip surgery, Ellie began with five days a week of physical and occupational therapy, which decreased to three days a week after she recovered some strength in her legs. Most recently, Ellie had a nine-day stay when surgeons implanted a Baclofen pump near her stomach with a connection in her spine to help keep her muscles relaxed.   

Ellie calls Child Life the “toy people.” Since CP limits her mobility, it’s difficult for her to color or use fine motor skills. Ellie and Walker played video games at home — Walker manipulated the joystick, and Ellie rested her hand on Walker’s. Our Gaming and Technology Specialist in the Child Life program used a 3D printer to create a joystick that Ellie can manipulate herself. In combination with other adaptive equipment, Ellie has increased her mastery of video games. While playing, she builds strength in her legs and core.

“Our family is grateful that the Child Life team is so creative and thoughtful when it comes to helping Ellie cope with time as an inpatient and outpatient,” Lauren says. “They know she loves Disney and princesses, so they surprised her with visits from Belle and Snow White. Child Life even found hospital gowns inspired by Disney princesses; Ellie still wears them as pajamas when she and her dad stay at the Ronald McDonald House.”